Publishing descriptions of non-public clinical datasets: proposed guidance for researchers, repositories, editors and funding organisations.

ABSTRACT: Sharing of experimental clinical research data usually happens between individuals or research groups rather than via public repositories, in part due to the need to protect research participant privacy. This approach to data sharing makes it difficult to connect journal articles with their underlying datasets and is often insufficient for ensuring access to data in the long term. Voluntary data sharing services such as the Yale Open Data Access (YODA) and Clinical Study Data Request (CSDR) projects have increased accessibility to clinical datasets for secondary uses while protecting patient privacy and the legitimacy of secondary analyses but these resources are generally disconnected from journal articles-where researchers typically search for reliable information to inform future resear

SUBMITTER: Hrynaszkiewicz I 

PROVIDER: S-EPMC5793987 | biostudies-literature | 2016

REPOSITORIES: biostudies-literature